Year Since Total Laryngectomy

ToBeGolden
ToBeGolden Member Posts: 695
in Head and Neck Cancer #1
Sunday November 18, is one year since my vocal cords were removed (a total laryngectomy). I thought I will mark the anniversary by posting some of the things I learned during the year.

The operation and my week-long stay in the ICU was virtually pain free. I think a laryngectomy is harder on the caregiver than the patient. At that time, I had severe cataracts and was legally blind. So I didn't even appreciate how grotesque I looked.

Speech is lost for a short time. The neck is so swollen that none of the methods for alaryngeal speech work well. But speech returns after a month or two. First there are isolated words and short phrases. Then as the year progresses, the speech becomes more normal: or a new normal at least.

There are three main methods to restore speech: esophageal speech, a TEP prosthesis, and the electrolarynx. Some laryngectomees choose to use writing instead of speech. I have met laryngectomees who made an excellent adjustment using each of the four methods of communication. The choice is highly individual.

Finally, I must mention (and I don't want to brag) that since my cancer has not (so far) invaded my mouth, I never had problems with taste, thick saliva, or swallowing. Knock on wood.

Comments

  • Billie67
    Billie67 Member Posts: 898
    #2
    Happy Anniversary
    It sounds like you have been thru a lot in this past year. My SCC was vocal cord cancer but we were able to treat with Chemo and rads so I was able to preserve my voice. I sound like I smoke about 2 packs a day but thru speech and swallow therapy I'm getting better too. I have a lot of respect for all the hard work you've done to get some voice. Until someone has been thru any of this they will never know how hard it really is.
    Keep up the good work and be healthy!
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #3
    one year later
    A lot said in a few words. I am glad you are doing so well, you deserve to feel better. It stops me in my tracks when I read your story and others like it. I remember what you said earlier about relearning to speak by methods that are not taught as much today. And as far as the tasting, saliva and swallowing go, good for you.

    Best,

    Matt
  • patricke
    patricke Member Posts: 570 Member
    #4
    HAPPY ANNIVERSARY
    Hey TBG happy anniversary, I too am a larynjectomee for over a year now, and am also adjusting to a new normal. As you noted, with time life progressively improves. Have a great day!

    PATRICK
  • Pam M
    Pam M Member Posts: 2,196
    #5
    HAD Cataracts
    Glad that's past-tense. GUess it probably served you well after surgery - I suppose you couldn't see the looks on your loved ones' faces after the operation. The phrase "neck is so swollen" makes me flinch. Must've been very hard during recovery, being too swollen to try any form of speech, and afraid that maybe none would be successful. And as far as the taste, saliva and swallowing, brag away. I like to hear when someone escapes issues with them.
  • luvofmylif
    luvofmylif Member Posts: 344
    #6
    Pam M said:

    HAD Cataracts
    Glad that's past-tense. GUess it probably served you well after surgery - I suppose you couldn't see the looks on your loved ones' faces after the operation. The phrase "neck is so swollen" makes me flinch. Must've been very hard during recovery, being too swollen to try any form of speech, and afraid that maybe none would be successful. And as far as the taste, saliva and swallowing, brag away. I like to hear when someone escapes issues with them.

    You are an amazing cancer
    You are an amazing cancer survivor and an inspiration. So, you said you are able to swallow. Are you able to eat?
  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Congratulations on your anniversary....
    You might remember my mom had a total laryngetomy, too...at the time I was in awe of her bravery...and all that she went thru to talk again, and the things she did after she could...she started a laryngectomy group here, she talked to schools about smoking, she councelled people who were facing the same surgery. You have been a great asset to this site...(even if you think your humor is sick...I find myself laughing!!).

    p
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #8
    Pam M said:

    HAD Cataracts
    Glad that's past-tense. GUess it probably served you well after surgery - I suppose you couldn't see the looks on your loved ones' faces after the operation. The phrase "neck is so swollen" makes me flinch. Must've been very hard during recovery, being too swollen to try any form of speech, and afraid that maybe none would be successful. And as far as the taste, saliva and swallowing, brag away. I like to hear when someone escapes issues with them.

    More Info
    Cataracts: Yes, I have 20/20 vision after cataract surgery on both eyes. Of course, cataract surgery is a piece of cake. I had chemo/rads in Jan Feb and consequently did not have cataract surgery until July/Aug.

    There is an interesting side note about cataract surgery. I blood-pressure-cuff-like apparatus is inflated on the eye during the pre-operation wait. It doesn't hurt, maybe the slightest discomfort. But it sure feels strange. It's kept on for about 10 minutes. When it's taken off, I couldn't see anything out of that eye. Everything was severely out of focus. For someone with 20/400 vision to say the cuff made it worse is really saying something. I hope you find this anecdote amusing. Certainly it is no reason to avoid cataract surgery. Immediately after the surgery the vision is greatly improved (from 20/400 to about 20/50). Then it improved to 20/20 over the next week.

    Eating/Talking: After total laryngectomy, I had a nasal-gastric tube for about 4 weeks. Part of my esophagus was reconstructed from muscles taken from my shoulder. I could not eat until the reconstructed esophagus healed. Also a tube in the esophagus would prevent most methods of alaryngeal speech.

    AND COME ON: I'm no more (or less) an inspiration than the rest of you. I temporarily lost my ability to speak, and that ability is not completely recovered. But some of you lost the ability to taste. And each of us have to work at getting the most out of our new bodies.
  • bjw1955
    bjw1955 Member Posts: 67
    #9
    I haven't been on here for
    I haven't been on here for awhile but happy anniversary for another year and I'm doing good also hoping your enjoying your thanksgiving bjw1955
  • QuisoNeo
    QuisoNeo Member Posts: 18
    #10
    Congrats Rick!
    Just a bit late, but wanted to say congratuations. You have been one of the people on here who have helped Paul and I get through. He had his laryngectomy in August (2012) and he is doing really well now. He just got the okay from the doc to get his g-tube taken out. He has had it for a little over a year now. He has been eating for about six weeks and just savored every moment of Thanksgiving dinner. First time he's been able to eat turkey! The day I took him to McDonald's and he was able to just take a bite of a burger,and taste it he cried. His energy level is amazing and he actually has an appetite for the first time in over a year. We were at UW Medical Center in Seattle yesterday and his CT looked good.
    The whole speech thing is a huge challenge for me and other people, but apparently not for him. The doc discuseed TEP yesterday and I was really encouraged and hopeful that Paul would go for it, but then this resident or whatever he is came in and started talking doom talk about the possible problems and now Paul doesn't want to try it. He won't use his electrolarynx and just doesn't seem motivated to work to be able to communicate. He thinks it's fine to make me play "charades" all the time or read his lips and it's exhausting and doesn't work in the car or in the dark at all. I have about had it. But the good news is that he is well.

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